患者关于数据保护和数据控制的知识,偏好和观点:一个探索性调查
Teodora Lalova-Spinks1,2, Robbe Saesen1,3, Mitchell Silva4
1Clinical Pharmacology and Pharmacotherapy, Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.
Frontiers in pharmacology
|March 6, 2024
概括
患者了解一般数据保护条例 (GDPR),但很少行使他们的数据权利. 虽然他们更喜欢个人数据控制,但他们支持集体工具和患者参与健康研究数据共享.
科学领域:
- 卫生法律和政策卫生法律和政策
- 生物伦理学生物伦理学
- 数据 隐私 数据 隐私 数据
背景情况:
- "一般数据保护条例" (GDPR) 规定了欧盟的个人数据,影响了健康研究.
- 关于GDPR对研究的挑战,存在批评,仅限于对患者观点的关注.
- 本研究通过检查患者的认识,权利行使和数据控制偏好来解决这一差距.
研究的目的:
- 评估患者,护理人员和患者组织成员对GDPR的认识和知识.
- 调查患者在行使数据主体权利方面的经验.
- 了解患者对数据控制的看法以及对数据控制工具的偏好.
主要方法:
- 在2022年12月至2023年3月期间进行了在线调查.
- 用描述性和推断性统计数据分析了定量数据.
- 从开放式问题的定性数据进行了主题分析.
主要成果:
- 来自28个欧洲国家的220名参与者,主要是患者 (77%),作出了回应.
- 90%的人听说过GDPR,但很少有人行使数据主体的权利.
- 个人数据控制工具略有优于集体工具;患者参与增加了数据共享的意愿.
结论:
- 加强数据保护教育对患者至关重要.
- 虽然个人控制是首选的,但集体工具可以减轻风险.
- 欧洲卫生数据空间需要平衡个人控制与研究数据的再利用.
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